Clinician Perception of Likelihood of Death in the Next Year Is Associated With 1-Year Mortality and Hospice Use Among Older Adults Receiving Home Health Care.

Background: Given the complex care needs of older adults receiving home health care (HHC), it is important for HHC clinicians to identify those with limited prognosis who may benefit from a transition to hospice care. Objectives: To assess the association between HHC clinician-identified likelihood of death and (1) 1-year mortality, and (2) hospice use. Methods: Prospective cohort study from the National Health and Aging Trends Study (NHATS) waves 2011-2018, linked to the Outcomes and Assessment Information Set (OASIS) HHC assessment and Medicare data among 915 community-dwelling NHATS respondents. HHC clinician-identified likelihood of death/decline was determined using OASIS item M1034. Multivariable logistic regression was used to assess the association between clinician-identified likelihood of death/decline and 1-year mortality and hospice use. Results: HHC clinicians identified 42% of the sample as at increased risk of decline or death. One year mortality was 22.3% (n = 548), and 15.88% (n = 303) used hospice within 12 months of HHC. HHC clinician-perceived likelihood of death/decline was associated with greater odds of 1-year mortality (odds ratio [OR], 6.57; confidence interval (95% CI), 2.56-16.90) and was associated with greater likelihood of hospice use (OR, 1.61; 95% CI, 1.00-2.62). Conclusion: HHC clinician perception of patients' risk of death or decline is associated with 1-year mortality. A better understanding of HHC patients at high risk for mortality can facilitate improved care planning and identification of homebound older adults who may benefit from hospice.

Association Between Documented Severe Pain and Cognitive Impairment in Home Health Care Patients: Results from the National Outcome and Assessment Information Set Data.

Background: Despite the growing importance of home health care (HHC) in the care of older adults with cognitive impairment, limited evidence exists about factors associated with documented severe pain among older adults receiving HHC. Methods: This secondary data analysis used a 5% random national sample of the 2017 national Outcome and Assessment Information Set (OASIS) data. Multivariable Poisson regression model was used to examine the association between documented severe pain, cognitive impairment, and a range of sociodemographic, clinical, and cognitive factors. Results: HHC patients (n = 183,038) were mean age 79.7 years, 61.7% female, and 78.6% non-Hispanic White. In multivariable models, cognitive impairment was associated with lower likelihood of documented severe pain (prevalence ratio [PR] = 0.96, confidence interval [CI] = [0.94-0.98]). Other factors independently associated with less documented severe pain included Hispanic ethnicity (PR = 0.92, CI = [0.89-0.95]), the oldest (≥85 years) groups (PR = 0.65, CI = [0.63-0.66]), male patients (PR = 0.83, CI = [0.82-0.85]), those with a formal diagnosis of Alzheimer's Disease Related Dementias (PR = 0.67, CI = [0.65-0.69]), and patients with verbal- and speech-related difficulty (PR = 0.83, CI = [0.80-0.86]). Patients with history of falls (PR = 1.18, CI = [1.16-1.20]), positive screen on the Patient Health Questionnaire-2 (PR = 1.36, CI = [1.31-1.41]), shortness of breath (PR = 1.14, CI = [1.12-1.14]), anxiety daily (PR = 1.16, CI = [1.14-1.18]), and anxiety daily or more often (PR = 1.40, CI = [1.37-1.43]) were more likely to have documented severe pain. Conclusions: HHC patients with cognitive impairment were less likely to have documented severe pain even with a range of sociodemographic, clinical, functional, and cognitive characteristics were considered. These findings may reflect a link between cognitive impairment missed opportunities for clinicians to provide pain management. Tailored interventions are needed to better assess and manage pain in this vulnerable group of HHC patients.

Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

BACKGROUND: Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). OBJECTIVE: To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. DESIGN: Retrospective cohort study. PARTICIPANTS: Community-dwelling participants ≥ 65 years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). MAIN MEASURES: Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. KEY RESULTS: While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40 h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. CONCLUSIONS: Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Prevalence and predictors of incident ADRD diagnosis following a Medicare home health episode.

INTRODUCTION: Home health (HH) may be an important source of care for those with early-stage/undiagnosed Alzheimer's Disease and Related Dementias (ADRD), but little is known regarding prevalence or predictors of incident ADRD diagnosis following HH. METHODS: Using 2010-2012 linked Master Beneficiary Summary File (MBSF) and HH assessment data for 40,596 Medicare HH patients, we model incident ADRD diagnosis within 1 year of HH via multivariable logistic regression. RESULTS: Among HH patients without diagnosed ADRD, 10% received an incident diagnosis within 1 year. In adjusted models, patients were three times more likely to receive an incident ADRD diagnosis if they had HH clinician-reported impaired overall cognition (compared to patients without reported impairment) and twice as likely if they were community-referred (compared to hospital-referred patients). DISCUSSION: There is a pressing need to develop tailored HH clinical pathways and protect access to community-referred HH to support community-living older adults with early-stage/undiagnosed ADRD.

Use of Home-Based Clinical Care and Long-Term Services and Supports Among Homebound Older Adults.

OBJECTIVES: Describe use of home-based clinical care and home-based long-term services and supports (LTSS) using a nationally representative sample of homebound older Medicare beneficiaries. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Homebound, community-dwelling fee-for-service Medicare beneficiaries participating in the 2015 National Health and Aging Trends Study (n = 974). METHODS: Use of home-based clinical care [ie, home-based medical care, skilled home health services, other home-based care (eg, podiatry)] was identified using Medicare claims. Use of home-based LTSS (ie, assistive devices, home modification, paid care, ≥40 hours/wk of family caregiving, transportation assistance, senior housing, home-delivered meals) was identified via self or proxy report. Latent class analysis was used to characterize patterns of use of home-based clinical care and LTSS. RESULTS: Approximately 30% of homebound participants received any home-based clinical care and about 80% received any home-based LTSS. Latent class analysis identified 3 distinct patterns of service use: class 1, High Clinical with LTSS (8.9%); class 2, Home Health Only with LTSS (44.5%); and class 3, Low Care and Services (46.6% homebound). Class 1 received extensive home-based clinical care, but their use of LTSS did not meaningfully differ from class 2. Class 3 received little home-based care of any kind. CONCLUSIONS AND IMPLICATIONS: Although home-based clinical care and LTSS utilization was common among the homebound, no single group received high levels of all care types. Many who likely need and could benefit from such services do not receive home-based support. Additional work focused on better understanding potential barriers to accessing these services and integrating home-based clinical care services with LTSS is needed.

Growth of Fee-for-Service Medicare Home-Based Medical Care Within Private Residences and Domiciliary Care Settings in the U.S., 2012-2019.

OBJECTIVES: Home-based medical care (HBMC) delivers physician or advanced practice provider-led medical services for patients in private residences and domiciliary settings (eg, assisted living facilities, group/boarding homes). We aimed to examine the time trends in HBMC utilization by care settings. DESIGN: Analyses of HBMC utilization at the national and state levels during the years 2012-2019. SETTING AND PARTICIPANTS: With Medicare public use files, we calculated the state-level utilization rate of HBMC among fee-for-service (FFS) Medicare beneficiaries, measured by visits per 1000 FFS enrollees, in private residences and domiciliary settings, both separately and combined. METHODS: We assessed the trend of HBMC utilization over time via linear mixed models with random intercept for state, adjusting for the following state-level markers of HBMC supply and demand: number of HBMC providers, state ranking of total assisted living and residential care capacity, and the proportion of FFS beneficiaries with dementia, dual eligibility for Medicaid, receiving home health services, and Medicare Advantage. RESULTS: Total HBMC visits in the United States increased from 3,911,778 in 2012 to 5,524,939 in 2019. The median (interquartile range) state-level HBMC utilization rate per 1000 FFS population was 67.6 (34.1-151.3) visits overall, 17.3 (7.9-41.9) visits in private residences, and 47.7 (23.1-86.6) visits in domiciliary settings. The annual percentage increase of utilization rates was significant for all care settings in crude models (3%-8%), and remained significant for overall visits and visits in domiciliary settings (2%-4%), but not in private residences. CONCLUSIONS AND IMPLICATIONS: The national-level growth in HBMC from 2012-2019 was largely driven by a growth of HBMC occurring in domiciliary settings. To meet the needs of a growing aging population, future studies should focus efforts on policy and payment issues to address inequities in access to HBMC services for homebound older adults, and examine drivers of HBMC growth at regional and local levels.

Home, but Not Homebound: A Prospective Analysis of Persons Living With Dementia.

OBJECTIVES: Homebound persons living with dementia may have increased difficulty accessing needed care in the community. This study identifies factors associated with becoming homebound among a national sample of Medicare beneficiaries with newly identified dementia. DESIGN: Prospective cohort analysis. SETTING AND PARTICIPANTS: We used the National Health and Aging Trends Study (NHATS) 2011-2018 to identify community-dwelling older adults at the time of a new dementia diagnosis (n = 939). Dementia status was determined based on cognitive testing and self and proxy reporting. METHODS: We compared characteristics of homebound (ie, those who never or rarely left home) and non-homebound participants at the time of dementia identification. Among non-homebound participants, we used a Fine-Gray subdistribution hazard model to identify factors associated with becoming homebound over follow-up (median follow-up 4 years), accounting for competing risks of death and moving to a nursing home. RESULTS: 20% of individuals with newly identified dementia were homebound and this group was more functionally impaired, medically complex, and socioeconomically disadvantaged as compared to the non-homebound. Over time, depression [subhazard ratio (SHR) 2.19, 95% CI 1.36, 3.54], living in an assisted living facility (SHR 2.60, 95% CI 1.35, 4.97), and Hispanic ethnicity (SHR 1.91, 95% CI 1.05, 3.47) were associated with becoming homebound. CONCLUSIONS AND IMPLICATIONS: Most adults are not homebound at the time of dementia diagnosis. Identifying and addressing modifiable factors like depression may slow progression to homebound status and enable persons living with dementia to access needed care in the community. In order to accommodate diverse individual and family preferences for long-term care, robust systems of home-based clinical and long-term care are necessary for those who do become homebound.

Medicare-funded home-based clinical care for community-dwelling persons with dementia: An essential healthcare delivery mechanism.

BACKGROUND: Over the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access. METHODS: Using the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia. RESULTS: Nearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas. CONCLUSION: Although almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population.

Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care.

CONTEXT: Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits. OBJECTIVES: describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits. METHODS: Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits. RESULTS: 64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) CONCLUSION: Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?

PURPOSE: Older adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience. METHODS: Using data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving). FINDINGS: About one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (-0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33). IMPLICATIONS: The provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.

Content of Home-Based Dementia Care: Adverse Consequences of Unmet Toileting Needs.

Despite high-intensity caregiving support, those with dementia may experience adverse consequences because the care they receive does not match their care needs. This study evaluates the relationship between content of care (i.e., specific assistance with toileting) and adverse consequences (i.e., toileting accidents because no one was there to help) in a population of community-dwelling Medicare beneficiaries with dementia and impairment in toileting enrolled in the National Health and Aging Trends Study (NHATS). Only two thirds of individuals received specific assistance with toileting, which was associated with a reduced risk of adverse consequences related to toileting in a multivariable model adjusted for key variables including high-intensity caregiving (odds ratio [OR] = 0.36, 95% confidence interval [CI] = [0.23, 0.58]). To ensure care meets the needs of those with dementia living in the community, it is important to consider not only the quantity but also the content of care received.

Receipt Of Home-Based Medical Care Among Older Beneficiaries Enrolled In Fee-For-Service Medicare.

Millions of older Americans are homebound and may benefit from home-based medical care. We characterized the receipt of this care among community-dwelling, fee-for-service Medicare beneficiaries ages sixty-five and older surveyed in the National Health and Aging Trends Study between 2011 and 2017. Five percent of those surveyed received any home-based medical care between 2011 and 2017 (mean follow-up time per person was 3.4 years), and 75 percent of home-based medical care recipients were homebound. Only 11 percent of the total homebound population (approximately 4.4 million fee-for-service Medicare beneficiaries in 2017) received any home-based medical care between 2011 and 2017. Receipt of home-based medical care was more common among homebound beneficiaries living in metropolitan areas and assisted living facilities, which suggests that geographic factors create operational efficiencies for home-based medical care practices that may improve their financial sustainability within the fee-for-service reimbursement setting. The significant unmet needs of this high-need, high-cost population and the known health and cost benefits of home-based medical care should spur stakeholders to expand the availability of this care.

The Association Between Income and Incident Homebound Status Among Older Medicare Beneficiaries.

IMPORTANCE: A large and growing population of older adults with multimorbidity, cognitive impairment, and functional disability live in the community, but many never or rarely leave their homes. Being homebound is associated with decreased access to medical services, poor health outcomes, and increased mortality. Yet, it is unknown what factors, in particular socioeconomic factors, are associated with new onset of homebound status. OBJECTIVE: To evaluate the association between income and risk of becoming homebound. DESIGN: Observational cohort study using 2011 to 2018 data from the National Health and Aging Trends Study, a nationally representative sample of Medicare beneficiaries aged 65 years and older. SETTING: Population-based study in the United States. PARTICIPANTS: A total of 7,042 initially nonhomebound community-dwelling older adults. EXPOSURE: Total annual household income at baseline (in 2011) measured via self-report. OUTCOME: Annual measure of homebound status, defined as leaving home an average of 1 d/wk or less. RESULTS: Over 7 years, 15.81% of older adults in the lowest income quartile (≤$15,003) became homebound, compared with only 4.64% of those in the highest income quartile (>$60,000). In a competing risks analysis accounting for risks of death and nursing home admission, and adjusted for clinical and demographic characteristics, those in the lowest income quartile had a substantially higher subhazard of becoming homebound than those in the highest income quartile (1.65; 95% confidence interval = 1.20-2.29). Moreover, we see evidence of a gradient in risk of homebound status by income quartile. CONCLUSION AND RELEVANCE: Our work demonstrates that financial resources shape the risk of becoming homebound, which is associated with negative health consequences. In the context of existing income disparities, more support is needed to assist older adults with limited financial resources who wish to remain in the community.

Trends In Residential Setting And Hospice Use At The End Of Life For Medicare Decedents.

As more people live and die in the community despite complex health needs and functional impairment, the need for hospice increases. We found high and increasing penetration of hospice in community-based residential settings, compared with hospice use in private residences and nursing homes.

Homebound Status and the Critical Role of Caregiving Support.

The homebound population relies on both paid and family caregivers to meet their complex care needs. In order to examine the association between intensity of caregiving support and leaving the home, we identified a population of community-dwelling, homebound Medicare beneficiaries age ≥65 (n = 1,852) enrolled in the 2015 National Health and Aging Trends Study and measured the support they received from paid and family caregivers. Those who had ≥20 h of caregiving support per week had 50% less odds of being "exclusively homebound" (rarely or never leave home) (OR 0.56, p < .01). Policies that facilitate increased support for family caregivers and better access to paid caregivers may allow homebound individuals who would otherwise be isolated at home to utilize existing community-based long-term care services and supports.

Living in the Community With Dementia: Who Receives Paid Care?

OBJECTIVES: Paid caregivers (eg, home health aides and personal care attendants) provide hands-on care that helps individuals with dementia live in the community. This study (a) characterizes paid caregiving among community-dwelling individuals with dementia and (b) identifies factors associated with receipt of paid care. DESIGN: Cross-sectional analysis. SETTING: The 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare recipients aged 65 years and older. PARTICIPANTS: Community-dwelling individuals with dementia (n = 899). MEASUREMENTS: Paid and family caregiving support was determined by participant or proxy report of help received with functional tasks. Multivariable logistic regression was used to examine factors associated with receipt of paid care. NHATS population sampling weights were used to produce national paid caregiving prevalence estimates. RESULTS: Only 25.5% of community-dwelling individuals with dementia received paid care, and 10.8% received 20 hours or more of paid care per week. For those who received it, paid care accounted for approximately half of the 83 total caregiving hours (paid and family) that they received each week. Among the subgroup of individuals with advanced dementia (those with impairment in dressing, bathing, toileting, and managing medications and finances), nearly half (48.3%) received paid care. Multivariable analysis, adjusting for sociodemographic, family caregiving support, functional, and clinical characteristics, found that the odds of receiving paid care were higher among men (odds ratio [OR] = 1.91; 95% confidence interval [CI] = 1.24-2.95), the unmarried (OR = 2.20; 95% CI = 1.31-3.70), those with Medicaid (OR = 2.16; 95% CI = 1.27-3.66), and those requiring more help with activities of daily living (ADLs) (OR = 1.32; 95% CI = 1.18-1.48) and instrumental ADLs (OR = 1.29; 95% CI = 1.14-1.46). CONCLUSIONS: New ways of making paid caregiving more accessible throughout the income spectrum are required to support family caregivers and respect the preferences of individuals with dementia to remain living in the community. J Am Geriatr Soc 68:186-191, 2019.

Beyond Functional Support: The Range Of Health-Related Tasks Performed In The Home By Paid Caregivers In New York.

Paid caregivers (for example, home health aides and personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used thirty semistructured interviews with dyads of patients or their proxies and their paid caregivers in New York City to understand the range of health-related tasks that paid caregivers perform in the home and determine whether these tasks are taught in the New York State Department of Health's curriculum. We found that patients, proxies, and paid caregivers all reported that paid caregivers performed a wide range of health-related tasks that were often not part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform in the home could help maximize the positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.

Meeting the Mental Health Needs of the Homebound: A Psychiatric Consult Service Within a Home-Based Primary Care Program.

The growing population of homebound adults increasingly receives home-based primary care (HBPC) services. These patients are predominantly frail older adults who are homebound because of multiple medical comorbidities, yet they often also have psychiatric diagnoses requiring mental health care. Unfortunately, in-home psychiatric services are rarely available to homebound patients. To address unmet psychiatric need among the homebound patients enrolled in our large academic HBPC program, we piloted a psychiatric in-home consultation service. During our 16-month pilot, 10% of all enrolled HBPC patients were referred for and received psychiatric consultation. Depression and anxiety were among the most common reasons for referral. To better meet patients' medical and psychiatric needs, HBPC programs need to consider strategies to incorporate psychiatric services into their routine care plans.

Health care utilization among homebound elders: does caregiver burden play a role?

OBJECTIVE: To describe informal caregiver and patient characteristics associated with high caregiver burden in homebound elders and to examine associations between high caregiver burden and patient health care utilization at the practice level. METHOD: We used a cross-sectional and prospective cohort design to study 214 caregiver-patient dyads in a home-based primary care program. RESULTS: Informal caregivers with the highest burden were more likely to help with more activities of daily living and instrumental activities of daily living and spend >40 hr/week in caregiving. Patients whose caregivers experienced the highest burden were more likely to be non-White males without 24-hr paid homecare. There were no significant independent associations between high burden and high calls, high visits, or social work involvement. DISCUSSION: In this medically complex and highly dependent population, further study of how families and other caregivers impact health care utilization is needed.